12 Visible Evidence of a Body Gone Rogue (Is Invisible Illness Truly Invisible?) Here is some visible evidence of invisible illness — photos, signs and symptoms from my personal life with chronic illness.

A light bump, pinch or punch can add a new bruise to the endless collection. I’m often surprised to find a new one hidden somewhere on my body"
🔗
www.achronicvoice.com/2021/07/14/b...
@achronicvoice.com

#AntiphospholipidSyndrome #PulmonaryEmbolism #ChronicPain #APS #MedTwitter

The Road to Recovery is the Longest of Them All — Read on A Chronic Voice .com

"one of the deadly #AutoimmuneDiseases that I live with is #AntiphospholipidSyndrome. It tends to hum along in the background most days, but when it strikes, it aims for the kill.": buff.ly/NqIh84f

#ChronicIllness #BloodClots #InvisibleIllness #disability #recovery #ChronicPain #NEisVoid

How Does Antiphospholipid Syndrome Affect The Body? (Beyond the Blood to Major Organs)

"A #stroke ..is one of the big bad ones when #AntiphospholipidSyndrome misbehaves..more than 20% of #strokes in patients younger than 45 years of age may be attributed to APS..also more common in males.": buff.ly/rSk1XA3

#neurology #ChronicPain #awareness #BloodClots #ChronicIllness #MedSky

Antiphospholipid Syndrome Emergency — Ovarian Cyst Ruptures. www . a chronic voice .com (A stethoscope has been laid flat in the shape of the pelvis, and joins with a paper cut-out of a pink uterus. Flowers and a menstrual cup are scattered everywhere.)

"It can be tricky to perform #surgery on a patient with #AntiphospholipidSyndrome, as I had the potential to clot whilst still #bleeding. That can quite literally, make a bloody mess of things.": buff.ly/YPGzS6U

#MondayBlogs #BloodClots #ChronicIllness #RareDisease #EmergencyDepartment #NEisVoid

A to Z Antiphospholipid Syndrome Guide - H is for Hughes’ Syndrome, Herbs, Haemorrhage and HITS (Heparin-Induced Thrombocytopenia).

"Having experimented with common Chinese and Indian #herbs in soups and foods – sometimes unintentionally – I was surprised to find out how quickly my #INR (blood clotting time) could swing.": buff.ly/wrQ752Z

#MondayBlogs #AntiphospholipidSyndrome #MedSky #BloodClots #ChronicIllness

Lupus anticoagulant and antiprothrombin antibodies: embracing the future Lupus anticoagulant (LAC) is a well-known laboratory test used to explore potential reasons for the prolongation of phospholipid-dependent coagulation tests. An extended clotting time in a…

"It is possible that additional types of #antiprothrombin antibodies exist... These new #antibodies may represent a novel functional class that could be called type III to distinguish it from existing type I & type II.": buff.ly/XRezHJ5

via @jthjournal.bsky.social
#AntiphospholipidSyndrome #MedSky

Pregnancy brings unique challenges for people with autoimmune diseases – but with early planning, pregnancy outcomes can be greatly improved Advances in research and medicine have given doctors helpful tools to assess a person’s individual risk and to help prepare them for pregnancy.

" #Preeclampsia .. preterm birth & #stillbirth all occur at higher rates in women with #AutoimmuneDiseases. This is esp true for women with #lupus &.. #AntiphospholipidSyndrome.": buff.ly/pAu8IEB

via @theconversation.com
#ChronicIllness #WomensHealth #fertility #pregnancy

How Does Antiphospholipid Syndrome Affect The Body? (Beyond the Blood to Major Organs) How does Antiphospholipid Syndrome affect the body? Whilst APS is a blood clotting disorder, it is also a systemic autoimmune disease.

"Skin-related manifestations are common & may be the 1st signs of #APS. 40% of APS pts who hv #cutaneous manifestations go on to develop multisystemic #thrombotic events which underscores the need to be extra vigilant" buff.ly/XofExpO
@achronicvoice.com
#AntiphospholipidSyndrome

Visible Evidence of Invisible Illness — Read the Post on A Chronic Voice .com

"I am on #BloodThinners for #AntiphospholipidSyndrome, which also makes it way too easy for me to get #bruises ..I’m often surprised to find a new one hidden somewhere on my body..People often ask if I’m being abused.": buff.ly/Fl54Mo5

#ChronicIllness #InvisibleIllness #awareness

The Annoying Thing About Living with Antiphospholipid Syndrome (My Personal Experiences)

"A #DVT or #BloodClot is a #MedicalEmergency that requires immediate attention. The biggest concern is that these blood clots break up, and lodge in places they shouldn’t be in such as the brain, heart or lung.": buff.ly/2GH9CT8

#AntiphospholipidSyndrome #AutoimmuneDisease #RareDisease

Thrombocytopenia in antiphospholipid syndrome: predictors, prognostic implications, and thrombotic risk in a large cohort study - PubMed Thrombocytopenia in APS patients, particularly in severe cases, correlates with heightened thrombotic risk and systemic manifestations. These findings highlight the importance of customized strategies that balance thrombosis prevention with bleeding risk, especially in complex cases.

Early studies suggest certain non-coding RNAs (like lncRNAs XIST & MEG3) may be linked with #APS and could become future biomarkers. Reminder: this is early-stage research: pubmed.ncbi.nlm.nih.gov/41297380/ #AntiphospholipidSyndrome

Shared Journeys in Hemostasis: Connecting Patient Voices with Hot Topics in the Hemostasis Laboratory Join a global symposium exploring Hemophilia and Antiphospholipid Syndrome (APS) with patient stories and expert insights for the Hemostasis laboratory.

Don't forget to register for this #Werfen symposium on #Haemophilia & #AntiphospholipidSyndrome — I will be one of the patient speakers! 😊 It's available at two timings:
March 24 (10:00 ET)
March 25 (05:00 ET)

#ChronicIllness #MedSky #BloodClot #disability #BloodTest #research #advocacy #LabTest

The doctor who wanted me dead A former consultant recounts a hospital admission in which she was told her life was too poor to justify resuscitation.

"The 1st 2 of my.. #autoimmune #illnesses – #scleroderma, #AntiphospholipidSyndrome, hypothyroidism, autoimmune uveitis & Sjögren’s syndrome – hv caused me to hv hundreds of #hospital admissions over the past 26 years &..45 to 50 operations.": buff.ly/h74ChFO

via @thespectator1828.bsky.social

Frontiers | Maternal and neonatal outcomes in obstetric antiphospholipid syndrome: a retrospective case-control study ObjectiveThe combination of low-dose aspirin (LDA) and low-molecular-weight heparin (LMWH) is the standard of care for obstetric antiphospholipid syndrome (O...

New study in treated obstetric APS pregnancies: standard aspirin + LMWH supports live births, but some risks (anaemia, lower birth weight, newborn jaundice/infection) may need extra monitoring: pubmed.ncbi.nlm.nih.gov/41451085/
#APS #Pregnancy #ObstetricAPS #APSResearch #AntiphospholipidSyndrome

Pregnacy Complications In Antiphospholipid Syndrome And Other Must Knows. Women's Health and APS. a chronic voice .com

"[The phenomenological study] illustrates the social burdens felt by #patients, with some marriages ending in #divorce due to expectations from husbands & mother-in-laws. The #psychological #suffering of the patient is huge.": buff.ly/lfGI5wF

#WomensHealth #marriage #AntiphospholipidSyndrome

Did You Know? Graphic with pink background and an umbrella icon. Text says: ‘People sometimes say “sticky blood”…but that phrase doesn’t mean one condition. It’s an umbrella label people use for many different clotting disorders.’ APS Support UK logo in the bottom left.

Pink slide with a large question mark. Text reads: ‘What does that mean? “Sticky blood” isn’t a medical diagnosis. It can be used to describe different reasons someone may be more likely to clot… and the cause matters.’ APS Support UK logo in the bottom left.

Pink slide listing conditions sometimes referred to as ‘sticky blood’: antiphospholipid syndrome; inherited thrombophilias (e.g., Factor V Leiden / prothrombin gene variant); Protein C, Protein S and antithrombin deficiencies; myeloproliferative disorders (e.g., essential thrombocythaemia, polycythaemia vera). Includes small medical icons and ‘Swipe for more’ at the bottom.

Pink slide with an illustration of a clinician taking a person’s blood sample. Text says: ‘If you’re navigating testing, appointments, or uncertainty, you’re not alone. Trusted info + support: aps-support.org.uk. Save this post + share it with someone who might need it.’ APS Support UK logo bottom right.

Friendly reminder: ‘sticky blood’ is a vague label, not one condition. It can refer to #APS, inherited #thrombophilias (e.g., Factor V Leiden), or some blood disorders. If you’re unsure, ask your GP/specialist what it means for you: cutt.ly/5tUGjj9x #StickyBlood #AntiphospholipidSyndrome

Ho Chi Minh City: Young man suddenly in critical condition after playing sports due to rare syndrome. (Dan Tri Newspaper) - After playing sports, the young man experienced shortness of breath and was diagnosed by emergency doctors with a life-threatening condition caused by a rare hypercoagulability s...

APS in the international spotlight 🇻🇳🌍 A Vietnam case story highlights how APS can affect people of different ages and backgrounds—and why awareness matters. Read more: cutt.ly/wtUrObtZ
#AntiphospholipidSyndrome #RareDiseaseAwareness

The Lowdown on Medications and Antiphospholipid Syndrome (Warfarin, Enoxaparin, DOACs, NSAIDs & More) Learn more about medications and Antiphospholipid Syndrome - from vitamin K antagonists (warfarin), enoxaparin, DOACs, NSAIDS and more.

"..future #AntiphospholipidSyndrome #treatments might shift to an immunological one, instead of merely targeting #anticoagulation. Unfortunately, despite the implication of [protease-activated receptors] in APS, there are no ongoing trials for APS patients.": buff.ly/PxlQVVv

#MondayBlogs #MedSky

12 Visible Evidence of a Body Gone Rogue (Is Invisible Illness Truly Invisible?) Here is some visible evidence of invisible illness — photos, signs and symptoms from my personal life with chronic illness.

A light bump, pinch or punch can add a new bruise to the endless collection. I’m often surprised to find a new one hidden somewhere on my body"
🔗
www.achronicvoice.com/2021/07/14/b...
@AChVoice

#AntiphospholipidSyndrome #PulmonaryEmbolism #ChronicPain #APS #MedTwitter

Webinar: Shared Journeys in Hemostasis: Connecting Patient Voices with Hot Topics in the Hemostasis Laboratory | Werfen North America LOG IN

There's still time to sign up for the #Werfen symposium on #Hemophilia & #AntiphospholipidSyndrome! It's free to do so & will cover the latest advances & guidelines on these 2 #BloodDisorders. I will also be 1 of 2 two patient speakers 😊 buff.ly/vtjPjQI

#ChronicPain #medicine #hematology #webinar

APS Support UK “Latest Research” graphic. A stylised web browser window reads, “New Case Report Reinforces: APS Diagnosis Needs More Than Blood Tests.” On the right is a large black-and-white medical scan image with coloured arrows pointing to areas of interest. Pink/red blood-cell shapes appear in the background, and the APS Support UK logo is shown at the bottom left.

#CaseReport: systemic + #CardiacSarcoidosis with persistent aPL positivity (no #Thrombosis). Useful reminder that aPL positivity ≠ #APS (APS typically requires antibodies + clinical events): pmc.ncbi.nlm.nih.gov/articles/PMC12754072 #AntiphospholipidSyndrome #Sarcoidosis #MedicalResearch #UKHealth

No mention again of #antiphospholipidsyndrome 😅

On behalf of the APS Foundation of America, Inc. (APSFA), we stand in solidarity with the millions of individuals and families worldwide observing Rare Disease Day.

#ShowYourStripes #RareDiseaseAwarenessMonth #AntiphospholipidSyndrome

Pregnancy brings unique challenges for people with autoimmune diseases – but with early planning, pregnancy outcomes can be greatly improved Advances in research and medicine have given doctors helpful tools to assess a person’s individual risk and to help prepare them for pregnancy.

"And recently, a study found that a drug named #certolizumab improved #pregnancy outcomes in women with #AntiphospholipidSyndrome, which is an #autoimmune condition with high rates of #pregnancy complications.": buff.ly/9whlmNt

via @theconversation.com
#rheumatology #MedSky #AutoimmuneDisease

Donate Today

Support the 1 in 2000 Americans living with Antiphospholipid Syndrome, a rare autoimmune clotting disorder.

You can donate at apsfa.org/donate. We need to find a better treatments or a cure.

#ShowYourStripes #AntiphospholipidSyndrome #RareDiseaseAwarenessMonth

12 Visible Evidence of a Body Gone Rogue (Is Invisible Illness Truly Invisible?) Here is some visible evidence of invisible illness — photos, signs and symptoms from my personal life with chronic illness.

CW: Mention of death
.
"I can bleed to death rather quickly in a major or even minor accident. In fact, I’ve had several near-death encounters from internal #hemorrhages from ‘normal’ bodily functions.": buff.ly/OtV0QGG

#AntiphospholipidSyndrome #ChronicIllness #lupus #InvisibleIllness #ChronicPain

"Skin-related manifestations are common & may be the 1st signs of #APS. 40% of APS pts who hv #cutaneous manifestations go on to develop multisystemic #thrombotic events which underscores the need to be extra vigilant" buff.ly/XofExpO

@achronicvoice.com
#AntiphospholipidSyndrome

Read On The Blog — An Experience From Hell — Pulmonary Embolism, DVTs And Antiphospholipid Syndrome. www. a chronic voice .com

"The doctors had discovered numerous #DVTs / #BloodClots in my legs, which had broken apart to travel up that dangerous path towards the lungs, cutting off my circulation to life in what is known as a #PulmonaryEmbolism.": buff.ly/XciVNIM

#MedSky #AntiphospholipidSyndrome

APS Support UK ‘Latest Research’ graphic. A stylised webpage window reads, ‘What does the latest research say about APS and surgery risk?’ with small text above saying ‘Full study link in post’. On the right is a photo of a surgical team in masks and caps in an operating theatre. Pale pink background with soft blood cell shapes. APS Support UK logo in the bottom left.

#AntiphospholipidSyndrome (APS) in orthopaedic foot & ankle surgery. Findings suggest higher post-op clot risk for #APS vs matched controls, including higher #DVT at 90 days even with prophylaxis, and higher PE at 90 days without prophylaxis: journals.sagepub.com/doi/10.1177/...

12 Visible Evidence of a Body Gone Rogue (Is Invisible Illness Truly Invisible?) Here is some visible evidence of invisible illness — photos, signs and symptoms from my personal life with chronic illness.

A light bump, pinch or punch can add a new bruise to the endless collection. I’m often surprised to find a new one hidden somewhere on my body"
🔗
www.achronicvoice.com/2021/07/14/b...

Via @achronicvoice.com

#AntiphospholipidSyndrome #PulmonaryEmbolism #ChronicPain #APS #MedTwitter